Addressing collective action dilemmas in the sharing of personal health data: Goldilocks and the installed base

Abstract

Shared information infrastructures are required for personal health data to be shared along patient trajectories. Building such data sharing infrastructures will involve multiple stakeholders, which can be expected to share some common goals, but also to have divergent interests and priorities. Thus, collective action dilemmas easily emerge and may prevent progress. In the paper we wish to investigate how social structures influence the emergence (or avoidance) of collective action dilemmas. We have conducted a retrospective, qualitative analysis of the establishment of the Great North Care Record in the UK, focusing on the approach to mobilize and organize the participants. We find that pre-existing, multi-organisational peer networks, forums and relationships were in place and were actively used as social modules for mobilization. These networks and forums allowed spaces and occasions for interactions, observations and negotiations that were necessary to avoid and resolve collective action dilemmas. Thus, these networks and forums provided a core “social installed base” on which to build. These networks had been ‘organically’ emerging along the patient flow patterns. They followed the “Goldilocks principle” (‘just right’) – small enough to allow the avoidance or resolution of collective action dilemmas, and large enough that benefits would accrue from the cooperation.